1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

Sleep with fibromaylgia

Posted , 5 users are following.

amybober5982
amybober5982

I was told I have fibro, have a lot Of the symptoms but one thing I do not have is the trouble sleepin. I have always been a tired person so I do not have trouble sleepin. I heard a few times that without this symptom it could not be fibro. I have had numerous test to rule out everything else.

Does anyone else with fibro that does not have this symptom. They do not have a problem with sleep.

However I do get sleep but still feel super tired like I only got a hour or 2 off sleep when getting up in the morning.

Thanks everyone just having a really hard time with this.

0 likes, 8 replies

8 Replies

  • alys97833
    alys97833 amybober5982

    Posted

    Hi, I am a bit like this too, I used to have a lot of problems getting to sleep as I have a history of depression, but for the last couple of years when I have been living with my boyfriend I do not have a problem getting to sleep but still wake up feeling very tired,

    so I think the significant thing is that you have 'unrefreshing sleep', which is sort of classed as a problem with sleep if you know what I mean, so rather than getting to sleep or staying asleep, the problem with your sleep is that it doesn't recharge you,

    I think being very tired all the time is a main symptom of fibromyalgia rather than like disrupted sleep or difficulty getting to sleep, although they are a very common symptom,

    I have only just been diagnosed with fibromyalgia recently, but have worked as a medical secretary in a G.P surgery for the last 5 years and have picked up a few things,

    maybe you could google unrefreshing sleep an do some research as to whether this fits your situation more?

    I hope this is some help x x

    • amybober5982
      amybober5982 alys97833

      Posted

      Thank you so much that makes me feel better. I have only known I had fibro for a few months an it seems like everyday it's something new. I am a big health worrier so I sways think it is something more than what it is.

      When all this started doctors couldn't tell me what it was an would just tell me it was anxiety. I knew it wasn't an stayed on top of it. When the muscle twitching started I did the worse thing an googled it an ALS came up. Every time something new comes up or my symptoms hang around for awhile I make myself sick because I can't get that monster disease out of my head. I have had numerous test along with a emg test an I had more than one doctor tell me there is no chance of ALS that it is fibro. So that's why I am so glad I have people like you that can answer questions because you have fibro.

      My symptoms are pain in arms, legs, an face. Usually not all at once. Muscle twitching, migraines, muscle soreness in legs an breast, tender spots, numbness sometimes in feet, fatigue all day, not feeling like I get enough sleep or a good nights sleep, arms an legs get tired easy when doing a physical activity an depression.

      I tried lyrica and cymbal late but they both make me sick so I take 300 mg at night of gabeptin. It has helped with the muscle twitching but not some much of anything else.

      What are your symptoms an have you found anything that helps.

      Thanks again!

  • anne90395
    anne90395 amybober5982

    Posted

    Hello amy,

    Nice to meet you! From what I have worked out about this tricky conition (and I have only had it for 3 years), it is not about being a bad sleeper. It is about having unrefreshed sleep. This explains the tiredness. Myself, sleep is a bit hit and miss. I can sleep well some nights, in fact I can sleep for England some nights! Then 3 hours later I am so exhausted I need a nap. So what I am saying is, I don't think the sleep thing is the definitive diagnosis. I am sure if you have been told you have it, you have it. Not nice, but you can learn to live with it, nd many of us do have very fulfilling lives, once we get used to our 'new normal'.

    Wish you well, stay on here cos you will get very good information and advice.

    Take care, Anne

    • amybober5982
      amybober5982 anne90395

      Posted

      Thank you very much Anne that helps a lot. Have you found anything that helps you as far as any medicine or any natural supplements?

      Thanks again.

      Amy

  • Maggers
    Maggers amybober5982

    Posted

    Hi Amy

    supplement wise - have you had your vitamin D level checked. Low vit D is very common in fibro folk.  Causes  muscles to ache and twitch if the level is low.  I have to take vit D supplement. As I can't tolerate conventional medicine I also take vit B12, CoQ10,L-Carnitine and Ticotrienols. These were recommended by private rheumatologist because the nhs in our Borough don't treat fibro!    Haven't found anything to help with my insomnia though. Also have a refined sugar and gluten free diet and use hypnotherapy too.   No doubt other fibro folk will be along to give you an idea of their regime.

  • kitten
    kitten amybober5982

    Posted

    hi Amy I am exactly like you apart from the two times I slept 4 hours through the day when I go to bed I am aching but still drop off. I was only diagnosed 6 weeks ago  but already have learnt so much from this site , I kept thinking maybe I don't have fibro because I don't have the burning feeling but I have now experienced it, I have always suffered with migraines but take beta blockers and had them under control  when I started to have 3 a week I was mortified and the only way I can describe how my body felt when I woke was like been trampled on by an elephant not that I have experienced this ha ha. I thought all my symptoms were the menopause but Dr said fibro every time I'm not feeling too bad I think maybe I have been wrongly diagnosed but I think with fibro you don't always have all the symptoms. I have been back from a week in Spain only had a few headaches and my body was pain free ( it was bliss ) but as soon as I went back to work the symptoms all came back and I knew I definitely had it. I tried gabepentin but never did any thing for me so I am trying pregabalin but early days yet so no change. This site is fab because some days I just really want to sit down and cry but then I read something on here and there are people a lot worse then me, so try to keep smiling Amy and look on here for advise because no one will think your moaning because we are all the same! Take care 😀
    • amybober5982
      amybober5982 kitten

      Posted

      Thank you so much, I have only been a member on here since yesterday an I have got a lot of good information an support. I am so glad I found this site.

      It affects my legs more than anything, they ache all the time, they burn when doing physical activity an that's even walking up stairs, feel weak sometimes an I have muscle soreness in the back calves that really hurts when I walk. Does this sound like anyone else's fibro.

      Thanks again for all the support.

  • kaz_40
    kaz_40 amybober5982

    Posted

    Hi amy Ive always been able to sleep ok but since having the fibro, I dont know what its like to sleep. I have real problems sleeping Ive tried different things to help me to sleep Id do anything for a decents nights sleep. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.